The Rare Inherited Disease No One Talks About

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26 Mar The Rare Inherited Disease No One Talks About

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For Part II: click here. 

I’ve been training Jason Jones (I call him Dr. Jones… Aqua fans will know why) for over two years now. When he came to me initially back in 2012, he informed me that the condition he suffers from on a daily basis, should have him completely immobile and wheelchair-ridden—despite the fact that he walked in unaided for his first session.
The words many doctors have said to him in the past linger along the lines of (paraphrasing, of course) ‘you shouldn’t be able to walk’, ‘you will end up in a wheelchair soon’, and even somewhat depressing words like ‘you can’t reverse or help any of this’.

These kinds of words that some professionals have told him before, can indeed be a reality situation in a lot of HSP sufferers. One example of this being with his recently-late father that lived his last part of his life in a wheelchair.

WHAT IS IT?

So, what is this condition that Jason and his dad suffer/ed from anyway? Well, the term HSP may ring a bell from a previous post of mine from many moons ago — if you’ve stuck with me that long (or you’ve been creepin’ on my FB page — which you should) — but, for all those that do not know, HSP is an acronym for hereditary spastic paraplegia.

A condition that attacks the lower extremities, disabling optimal movement capabilities. It is one that affects around 2–6% per 100,000 humans of the Earth’s population.

So yeah, you would be right in thinking that it is one insanely rare condition. One, in fact, that affected “Dr.” Jones in practically a blink of an eye.

HOW IT BEGAN

One morning, during his 26th year on this planet, he woke up to HSP beginning to take a hold on him. Over the course of the next seven or so years, the conditions strength grew like Popeye after consuming a can of spinach, increasing in severity, and resulting in him not being able to run, hop on and off a bike with ease, or kick his leg to head height — like he once did quite easily back in his karate days.

This condition is sometimes mistaken for cerebral palsy as the individuals walking gait is seen to also lose efficiency. With the heels becoming unable to plant correctly, and the neural firing of nerve impulses being slowed down on their way from the brain towards the lower limbs, the balance and coordination of individual’s with HSP, also comes along for the ride.

HOW RARE?

What may be confronting to know is that this condition can affect practically anyone from the nappy-wearing age of one, right up to to 60. And, at any time, too.

However, it is a condition that comes from your ancestors genes, so looking down your timeline can indicate whether or not you will be affected by it.

HIS STORY

Why am I telling you this? Well, I think his story is incredible. To go through all of this, to lose the movement he once had, yet still be attacking his life to the best of his ability, is nothing short of an inspiration.

With his Tafe studies, gym frequents, a myriad of external activities, plus the desire to one day compete at a national level in hand-cycling, you can’t not see that he is doing what he can to keep active and pursue dreams with a condition that can and would, no doubt, take down a number of people’s positive outlook and willingness to do more with their life.

THE WHAT

To keep the “doctors” limbs moving to the best of his ability, he makes sure to keep on top of his foam rolling, stretching, and of course, basic movement patterns.

Whilst the smallest weather changes can indeed affect his suppleness, by keeping his joints moving and as free as possible, whilst also building strength through other movements that provide him with similar benefits, he is able to be the one in control of his HSP’s attack upon his body.

For instance, due to his ankles having a low level of mobility, and the fact that his walking gait suffers, along with his ability to trip over more frequently than even the clumsiest of humans, one movement that is difficult for him to master, is the simple squat.

To get around this, however, we have changed his squat style by restricting the angle in which his shins must partake in during a squat. We can do this by putting more emphasis on keeping them vertical, along with focusing on dominating the movement more-so, through his hips.

It’s a simple fix, of course, and one that I also use with clients that have acute knee pain or injury history. But, by limiting the need for a sharp angle with the shins, Jason is able to still receive all the benefits of performing a squat — including the strength and mobility perks that come with resistance training.

SUPPORT

Anyway, before I leave you with a short video of him killing it in the gym the other day, I should quickly pimp his Facebook page, where you can check out more of his movements, whilst also supporting his awareness-spreading campaign of HSP.

Also, if you would like to read more about the condition, hit this link for a comprehensive breakdown.

Thanks for reading.

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Hayden Perno
Hayden Perno
info@haydenperno.com